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AWARENESS AND PERCEPTIONS OF DEMENTIA REPORT – AUGUST 2018

CONTENTS P3

BACKGROUND

OBJECTIVES

METHODOLOGY

INTERNATIONAL COMPARISONS

EXECUTIVE SUMMARY

P12

MAIN FINDINGS - EXPERIENCE AND KNOWLEDGE

P19

- PERCEIVED SCALE OF THE ISSUE

P24

- ATTITUDES AND UNDERSTANDING

P32

- ACCESS TO SERVICES

P40

APPENDIX: SAMPLE PROFILE 2

BACKGROUND As New Zealand’s population ages, dementia is becoming a more significant health challenge, with more than 170,000 people forecast to be affected by 2050. It is the general public who may experience dementia personally or within their family, and who may also face the challenge of providing and/or receiving care. The aged care sector and supporting agencies are grappling with how best to respond to the challenge.

The NZ Dementia Cooperative is a professional support organisation made up of people who work in the dementia sector. The Cooperative acts as a central knowledge broker, with networks across the country, linking sectors and creating tools and opportunities for people to contribute their expertise and knowledge, all aimed at improving standards of care and support for people with dementia and their families. Dementia New Zealand is a national body supporting its Affiliate organisations working in local communities. Their aim is to deliver high-quality support services for people with dementia and their families and whanau. Dementia New Zealand’s Affiliates cover 70% of New Zealand’s population, with organisations in Auckland, Waikato, Lakes, Hawkes Bay, Wellington, and Canterbury. There are presently no publicly available statistics on New Zealand attitudes toward dementia, and Dementia New Zealand and NZ Dementia Cooperative rely on Australian statistics. Summerset Group is partnering with Dementia New Zealand and NZ Dementia Cooperative to better understand awareness and perceptions of dementia. 3

METHODOLOGY NOTES TO THE REPORT SURVEY APPROACH Online panel survey using SSI’s online panel. FIELDWORK PERIOD Survey fieldwork was conducted from 8 – 25 June 2018.

COMPLETED SURVEYS Average survey length was 11 minutes. COMPLETED QUESTIONNAIRES 1,000 people aged 18+ (including 264 aged 60+ years). Please refer to the appendix for the sample profile

WEIGHTING The findings in this report have been weighted to the total New Zealand population according to region, age, and gender using 2013 Census statistics.

• All subgroup differences mentioned in this report are statistically significant at a 95% confidence level. This means there is a 95% chance the difference is a true difference in the population and not due to random variation due to sampling. • When subgroup differences are mentioned, the results discussed are always in comparison with the overall/total result (that is, all those who answered the question) unless stated otherwise. • Don’t know’ responses have been included when they are valid responses and add value to the findings. Please refer to the base descriptions on each page for more information.

• Numbers have been rounded to the nearest whole number. This means that some tables may add to 99% or 101%.

MORTALITY DATA FOR NEW ZEALAND MAIN CAUSES OF DEATH (2015)

N = 31,796 %

All cancer (lung cancer = 5.7%)

30.2

Heart disease

15.8

Other heart disease types

4.9

Cerebrovascular

7.8

Chronic lower respiratory

5.7

Influenza / pneumonia

2.4

Diabetes

2.6

Intentional self harm

1.7

Motor Vehicle accident

1.1

Source: 2015 Mortality Data, Ministry of Health, New Zealand

NOTE: • Alzheimers Australia says that dementia is the second leading cause of death for Australians, 2015. • Alzheimer’s disease is officially listed as the sixth-leading cause of death in the United States.CDC, 2016. But there is acknowledgment that while dementia may be a contributing cause and a complicating factor, people living with dementia commonly die of other immediate causes, such as pneumonia.

EXECUTIVE SUMMARY

KEY TAKE-OUTS AND IMPLICATIONS

Overall New Zealanders are open to learning more about dementia. We are also more positive than overseas results that people with dementia can still enjoy life and we are less likely to say that people with dementia need to be cared for as you would a child, or the person you know eventually disappears. This suggests, the kiwi culture, in some ways may be less judgmental about dementia and its symptoms. However, there is still some stigma associated with dementia as we are less likely or unsure if we would want our employer to know, if we were diagnosed with the early stages of dementia. However, New Zealanders do fear dementia. We fear it more than other conditions that we think are more likely to kill us, yet we prioritise it below other diseases and conditions for the New Zealand Health system and only half see it is a moderate or major issue. In addition, while it is our second biggest fear, we are not aware of the scale of the potential problem. New Zealanders donâ€™t understand the incidence or the link to mortality from dementia.

With the appetite for more information, this represents a big opportunity to provide information to New Zealanders. For many, this will be through their GP as this is their first point of call, however there is also an opportunity for wider messaging to reduce the stigma associated with dementia. Like a mental illness, e.g. depression, there is no cure for dementia but with education and access to support services it is possible to make peopleâ€™s lives better. Many of the other conditions competing for funding and awareness occur at any age (e.g. depression, obesity, cancer), however dementia is more likely to affect older people. Does this impact how New Zealanders view the issue and the perceived priority of government support? Finally, there is a lack of knowledge about the organisations who support people with dementia and what their services are like. Even increasing the profile of these organisations would be beneficial, both for those who need these services and from a potential funding view point. 7

MAIN FINDINGS

EXPERIENCE AND KNOWLEDGE

KEY FINDINGS - EXPERIENCE & KNOWLEDGE •

• • •

•

Just over 60% of the New Zealand adult population have some personal experience with dementia, or conversely 40% don’t currently know anyone with dementia. A fifth of New Zealanders indicate they have ever cared for someone with dementia. This indicates there is still a sizeable proportion of the population that has limited experience with dementia. Reinforcing this, just under 20% feel they know a lot or great deal about dementia. This is lower than results from overseas. Those under the age of 50 are less likely to feel they know about dementia. As well as a self reported lack of general understanding of dementia, New Zealanders lack knowledge about the different types of dementia. Just over a fifth incorrectly believe that dementia is a normal part of aging – this increases to nearly a third of those aged 18-24 years old.

PERSONAL EXPERIENCE OF DEMENTIA Three fifths (61%) of New Zealanders have a current personal experience with dementia, and a fifth have ever cared for someone with dementia.

WHAT IS YOUR PERSONAL EXPERIENCE OF DEMENTIA?

I have a partner/ family member with dementia

24%

I know someone else (not listed) with dementia

23%

21%

I have a friend with dementia

I have a job involving people with dementia

I have a neighbour with dementia

“I visit dementia patients with my dog”

“Wife is a gerontology nurse who deals with dementia and did postgraduate studies in dementia”

I have a work mate with dementia Other I don't know anyone with dementia

EVER CARED FOR SOMEONE WITH DEMENTIA IN A VOLUNTARY CAPACITY

8% 39%

75%

4% Unsure

Yes

SUBGROUPS DIFFERENCES Those aged 60 – 69 and 70+ years are more likely to say they know someone with dementia (73% and 75%, respectively cf. 61%), while those aged 18-24 (49%) and 30-39 years (52%) are less likely.

Base: All respondents (n=1000) Q9. What is your personal experience of dementia? Q10. Have you ever cared for someone or helped someone with dementia in a voluntary capacity?

SELF-ASSESSED KNOWLEDGE Nearly one in five (18%) of New Zealanders say they know a lot or a great deal about dementia. This is comparatively less than the British Social Attitudes study where one in four (26%) said they know a lot or a great deal about dementia.

HOW MUCH DO YOU FEEL YOU KNOW ABOUT DEMENTIA?

49%

18%

know nothing or only a little

10%

39%

33%

Know nothing at all or next to nothing

know a lot or a great deal

Know only a little

Know something

14% Know quite a lot

Know a great deal

INTERNATIONAL COMPARISONS (England1) HOW MUCH DO YOU FEEL/THINK YOU KNOW ABOUT DEMENTIA?

33%

Know nothing at all or only a little

Base: All respondents(n=1000) Q7. How much do you feel you know about dementia? 1. British Social Attitudes

41%

Know something

26%

Know quite a lot or a great deal

SELF-ASSESSED KNOWLEDGE Self assessed knowledge of dementia varies by age group and naturally, whether the person knows someone with dementia. Those aged 40-49 years old are significantly less likely to indicate they know quite a lot or a great deal about dementia. This is perhaps counterintuitive, given their stage in life and they may be dealing with older relatives but perhaps they know enough, to know they don’t know very much? % WHO KNOW QUITE A LOT OR A GREAT DEAL ABOUT DEMENTIA

23%

25%

26%

18% 15%

15%

12%

11%

(n=133)

25-29 years (n=77)

30-39 years (n=162)

40-49 years (n=190)

% WHO KNOW QUITE A LOT OR A GREAT DEAL ABOUT DEMENTIA

•

(n=392) Base: All respondents(n=1000) Q7. How much do you feel you know about dementia? 1. British Social Attitudes

(n=608)

(n=149)

70 years or over (n=115)

(England1)

•

Know someone with dementia

60-69 years

(n=174)

INTERNATIONAL COMPARISON

26%

I don’t know anyone with dementia

50-59 years

•

Self-assessed knowledge increases as age increases – peaking at 55-64 years and then declining: • 18-24 years – 16% know quite a lot or a great deal • 55-64 years – 34% • 75+ years – 22% Those who have cared for someone with dementia are more likely to say they know quite a lot or a great deal (57% cf. 26%). Women are more likely than men to say they know a lot or know a great deal (32% of women cf. 20% of men) - Significantly lower than total - Significantly higher than total

KNOWLEDGE OF DEMENTIA When respondents were asked whether they thought some statements about dementia were true or false, nine in ten (90%) correctly identified dementia as a disease of the brain. However, only three quarters of New Zealanders correctly identify there are many different types of dementia, and nearly a quarter incorrectly said dementia is a normal part of aging. There are also relatively high proportions of New Zealanders saying don’t know reinforcing their general lack of knowledge.

INCORRECT/DON’T KNOW

CORRECT

Dementia is a disease of the brain

7% 3%

Alzheimer's is a type of dementia

12% 5%

There are many different types of dementia 18% 6%

Dementia is a normal part of aging

12%

22%

FALSE

INTERNATIONAL COMPARISON (England1)

90%

83%

76%

66%

DON'T KNOW

94%

72%

69%

TRUE

Base: All Respondents (n=1000) Q8. We have some more questions about dementia. It doesn’t matter if you only know a little or a lot, it’s your impressions we are interested in. For each of the following statements please indicate whether you think the statement is true or false… 1. British Social Attitudes

KNOWLEDGE OF DEMENTIA Knowledge about dementia statements again varies by age and whether the person knows someone with dementia.

SUBGROUP DIFFERENCES • Those aged 18-24 are less likely to know • dementia is a disease of the brain (85% cf. 90%) • Alzheimer’s is a type of dementia (73% cf. 83%). • Those aged 18-24 more likely to think • dementia is a normal part of aging (31% cf. 22%). •

Those who don’t know anyone with dementia are less likely to know • dementia is a disease of the brain (86% cf. 90%) • there are many different types of dementia (65% cf. 76%) • Alzheimer's is a type of dementia (77% cf. 83%).

•

Those in a trained service worker occupation (e.g. teacher, nurse, police) are more likely to know • there are many different types of dementia (87% cf. 76%).

•

Those of Maori ethnicity are more likely to think • dementia is a normal part of aging (34% cf. 22%).

•

Those of Asian ethnicity are more likely to say they don’t know • if dementia is a normal part of aging (22% cf. 12%) • Alzheimer’s is a type of dementia (23% cf. 12%).

PERCEIVED SCALE OF THE ISSUE

KEY FINDINGS - PERCEIVED SCALE OF THE ISSUE • • •

•

There is a clear lack of knowledge of the incidence of dementia in New Zealand. This leads to half of adult New Zealanders thinking dementia is not a moderate or major issue. There are also lower perceived levels of mortality from dementia compared to other common diseases/ conditions. While we don’t have New Zealand statistics to support this is not true, international evidence suggests dementia should be much higher up the list. As a result, dementia is currently ranked last in terms of people thinking the health system should prioritise it – behind cancer, heart disease, obesity, depression and strokes. Is this influenced by strong campaigns, e.g. depression, as well as the fact that some of these diseases are curable? Dementia is more of a social issue and the aim is about improving the quality of life of someone with dementia, with the support of their community.

PERCEPTION OF INCIDENCE OF DEMENTIA There are a wide range of estimates from New Zealanders for how many people have dementia over the ages of 65 and 80 years old. The results to these questions represent roughly a normal distribution, suggesting there is a lack of understanding. In addition, a fifth of the population indicate they are ‘unsure’. Using Australian statistics would suggest New Zealanders are overstating the proportion of people over 65 years old who have dementia. While the average for the proportion over 80 years is closer to the actual result, there is roughly a third who underestimate and another third who overestimate it. PERCENTAGE OF PEOPLE 85+ WITH DEMENTIA

PERCENTAGE OF PEOPLE 65+ WITH DEMENTIA

Under 5%

5% up to 10%

16%

10% up to 20%

29%

20% up to 40%

20%

40% up to 60% 60% up to 80% 80% plus Unsure

16% of population are right (if 1 in 10 over 65+ have dementia*)

Under 5%

5% up to 10%

10% up to 20%

20%

20% up to 40%

22%

40% up to 60%

17%

60% up to 80%

80% plus

20%

Base: All respondents (n=1000) Q17. What percent of people aged over 65 years do you think have dementia? Q18. What percent of people aged over 85 years do you think have dementia?

Unsure

22% of population are right (if 3 in 10 over 85+ have dementia*)

8% 2% 21%

* Australian figures from The National Centre for Social and Economic Modelling

IS DEMENTIA AN ISSUE FOR NZ? Over half (51%) of New Zealanders think dementia is a major or moderate issue for New Zealand. However, that means a half don’t believe dementia is a big issue for New Zealand. This suggests there is an opportunity for public messaging about the impact of dementia on New Zealand and the work being done overseas in this space.

HOW BIG AN ISSUE DEMENTIA IS FOR NEW ZEALAND

51%

10%

Not really an issue at all

37%

Minor issue

34%

Somewhat of an issue

Moderate issue

18%

Major issue

SUBGROUP DIFFERENCES • Age is a factor in identifying whether dementia is a issue for New Zealand. Those aged 18-24 and 30-39 years are less likely to say dementia is a moderate or major issue (36% and 40%, respectively), while those aged 60-69 and 70+ years are more likely it is a major or moderate issue (66% and 65%, respectively). • Males (45%) are less likely, while females are more likely (57%) to say dementia is a moderate or major issue. • Personal exposure to dementia is a predictor of whether New Zealanders believe dementia is an issue. Those who do not know someone with dementia are less likely to say they believe it is a moderate or major issue (40% compared to 51% of the total).

Base: All respondents(n=1000) Q21. How big an issue do you think dementia is for New Zealand?

COMPARED TO OTHER CONDITIONS When asked about dementia alongside other conditions, dementia was thought to cause the least deaths of the four listed illnesses. It was also ranked sixth out of six conditions for the order that they should be prioritised by the New Zealand health system. While New Zealand mortality data (refer slide in the first section) doesnâ€™t mention dementia, the correct order in Australia is heart disease, dementia, stroke and lung cancer. This is a powerful message to show a lack of understanding of the impact of dementia and how more needs to be done to educate the population. ORDER OF PRIORITY FOR NEW ZEALAND

Heart disease

Most Important

Most deaths

CAUSES OF DEATH

Depression

Least important

Dementia

Heart disease Obesity

Lung cancer Least deaths

Stroke

Cancer

Stroke Dementia

Base: All respondents(n=1000) Q6. Please rank the following four health conditions by cause of death, from highest (causes the most deaths) to lowest (causes the least number of deaths)? Q22. Please rank the following six health conditions in which order you think they should be prioritised by the New Zealand health system, from 1 as the highest priority to 6 as the lowest priority?

ATTITUDES AND UNDERSTANDING OF DEMENTIA

KEY FINDINGS - ATTITUDES AND UNDERSTANDING OF DEMENTIA • •

• •

•

People are fearful about dementia, even though they think other things are more likely to kill them e.g. heart disease, strokes. Cancer is still the number 1 fear. Is the high level of fear for dementia related to: • fear of no cure • fear of losing self, pride, burden on others • stigma attached to symptoms of dementia. Can this fear be used to increase awareness? New Zealanders want to know if they have dementia but are afraid of what happens next. The fact they are unsure about letting their employer know and the high proportion (a fifth) that would be ashamed indicates there is a social stigma attached to a dementia diagnosis. However, there are some notable differences between how New Zealanders view living with dementia and the care needed and results from overseas studies. This is a positive story that should not be underestimated. There are misconceptions regarding risk factors and if a person can do anything to help reduce the risk of getting dementia. Given the high level of fear, there is a real need for public education around what the risk factors are.

THE FEAR Dementia is the second most feared disease out of a list of six serious conditions. Two in five (40%) New Zealanders are afraid of getting dementia, while around a third are scared of getting heart disease (35%) or having a stroke (36%) despite the fact they believe these are more likely to kill them. Is this to do with the lack of a cure, lack of understanding or the perceived loss of self. Regardless there is an opportunity to capitalise on people’s fear to raise awareness of dementia. Afraid/very afraid

Dementia (n=953) Stroke (n=962)

15%

31%

18%

12%

10%

20%

18%

31%

21%

25%

22%

19%

33%

18%

INTERNATIONAL COMPARISON (Portugal1)

46%

40%

36%

Most Afraid

Cancer (n=962)

Cancer

Dementia

Stroke

22%

12%

31%

19%

16%

35% HIV/AIDS

Depression (n=953) HIV/ Aids (n=959)

Not at all afraid

22%

24%

50% Not very afraid

24%

21% Somewhat afraid

16%

14%

30%

10% 7% 12%

18%

Afraid

Least Afraid

Heart disease (n=961)

Heart Disease Depression

Very afraid

SUBGROUP DIFFERENCES Those aged 40-49 years (47%) and those who are unemployed (52%) are more likely to be afraid of getting dementia than the total population (40%). Base: All respondents excluding don’t know Q5. Now, thinking about your future, how afraid are you of getting each of the following diseases 1. National Opinion Survey About Dementia: Knowledge, Attitudes And Beliefs

AWARENESS OF SYMPTOMS INTERNATIONAL COMPARISONS

AWARENESS OF SYMPTOMS OF DEMENTIA

Wandering and getting lost and shortterm memory loss are the most wellWandering and getting lost known symptoms of dementia with Short term memory loss nearly four in five (78% and 77%, Losing track of time respectively) New Zealanders recognising it as something a person Difficulty managing daily tasks with dementia may experience. Personality changes

While this is the majority, it is still below the results seen in European countries.

78%

88% (Poland 2) - 95% (Spain2)

77%

80% (Poland 2) - 94% (France 2)

74%

66% (England1)

73%

83% (France 2) - 89% (Portugal 2)

70%

Difficulty communicating

66%

Making poor decisions

65%

Long term memory loss

61%

Agitation

59%

79% (Portugal 2)

Depression

50%

Altered sleep patterns

47%

Hallucinations and delusions

38%

50% (England1) NA 24% (France 2) - 56% (Portugal 2)

Loss of appetite

30%

21% (Poland2) - 52% (USA 2)

Losing weight

29%

15% (England1)

Unsure what a person with dementia would experience

Hair loss

5% (England1)

Base: All respondents (n=1000) Q16. Which of the following may a person with dementia experience? 1. British Social Attitudes 2. National Opinion Survey About Dementia: Knowledge, Attitudes And Beliefs

FEELINGS ABOUT A DEMENTIA DIAGNOSIS A clear majority (85%) of New Zealanders agree they would want to be told their diagnosis if they had symptoms of dementia, although, 73% say they would be very worried about their future if they were told they had early signs of dementia. Only a third would (and 14% don’t know if they would) want their employer to know – suggesting even with early stages there is a social stigma attached to a diagnosis. This is supported by nearly a fifth agreeing they would feel ashamed if told they had dementia. Strongly agree/ Agree

If I had symptoms of dementia, I would want to 4% 8% be told my diagnosis 2% 2%

36%

I would feel very worried about my future if I was 2% 18% told I had early signs of dementia 2% 4%

I worry about someone in my family or close 5%4% 16% friends developing dementia

I would not want my employer to find out if I were told I had early signs of dementia

14% 8%

I would feel ashamed if I were told I had early 6% 16% signs of dementia

Don't know/ Can't say

Strongly disagree

Base: All respondents (n=1000) Q12. How much do you agree or disagree with the following: 1. British Social Attitudes

Disagree

85%

48%

34%

25%

23%

39%

Somewhat agree

73%

39%

31%

22%

20%

Agree

52%

50%

10%

32%

37%

15% 5%

19%

13%

19%

22%

INTERNATIONAL COMPARISON (England1)

Strongly agree

BELIEFS ABOUT DEMENTIA There are quite high levels of ‘somewhat agree’ or ‘don’t know’ about how people, once they have dementia, can live. Ten percent of the population believe, even with early stage dementia, people can not live independently, and a further 11% don’t know. This again suggests a low level of understanding especially how dementia progresses. However, there are some positive results here too. New Zealanders are, more likely than other Strongly countries, to say people with dementia can still enjoy life. agree/ agree

Every person with dementia has different needs

People with dementia can still enjoy life

People with dementia should be involved in activities in the community

People with early stage dementia can live independently

Don't know/ Can't say

1% 5% 1% 12%

6% 3%

51%

21%

47%

9%1%3% 19%

11% 1% 9%

Strongly disagree

30%

22%

48%

26%

Disagree

Base: All respondents (n=1000) Q15. How much do you agree or disagree with the following 1. British Social Attitudes 2. National Opinion Survey About Dementia: Knowledge, Attitudes And Beliefs

Somewhat agree

20%

41%

Agree

12%

INTERNATIONAL COMPARISONS

81%

70%

52% (England1)

68%

65% (Portugal 2) – 89% (France2)

53%

Strongly agree

BELIEFS ABOUT DEMENTIA There are some notable positive differences between our results and those from overseas about how people with dementia need to be cared for or treated. This suggests that the New Zealand culture is potentially more open and less judgmental regarding those with dementia. Strongly

When they have dementia, the person you knew 10% 2% 7% eventually disappears People with dementia can be unpredictable and difficult

1% 11% 4%

People with dementia need to be cared for as you would a child

13% 4%

Once someone is diagnosed with dementia, they are not treated like a thinking human being any more

I would find it hard to talk to someone with dementia There is little or no benefit to be gained from telling someone they have dementia Don't know/ Can't say

Strongly disagree

Base: all respondents (n=1000) Q15. How much do you agree or disagree with the following: 1. Attitudes To And Knowledge Of Dementia In Northern Ireland

14%

Disagree

29%

56%

75%

17%

54%

10%

31%

73%

17% 4%

21%

17% 3%

20%

21%

27%

35%

15%

18%

37%

23%

INTERNATIONAL COMPARISON (Northern Ireland1)

37%

30%

9% 10%

13%

25%

agree/ agree

26%

46%

Somewhat agree

13% 10% 3%

Agree

13%

46%

37%

Strongly agree

RISK FACTORS FOR DEMENTIA INCORRECT/DON’T KNOW

A quarter of people incorrectly believe that there is nothing anyone can do to reduce their risk of getting dementia, and a further third don’t know.

If fact, apart from the first statement, there is a high proportion of ‘don’t know’ responses about risk factors indicating a lack of understanding. Given the high level of fear, potentially caused by a lack of a cure, there is a real need for public education around the risk factors of dementia.

People aged under 65 years can get dementia If one of your parents gets dementia, you are more likely to get it too*

CORRECT

12% 5% 39%

INTERNATIONAL COMPARISONS (England1)

83%

34%

39% 22%

People who exercise are less likely to get dementia

36%

27%

37%

48%

People who drink heavily are more likely to get dementia

43%

24% 33%

34%

People who eat healthily are less likely to get dementia There is nothing anyone can do to reduce their risks of getting dementia

37%

32%

32% 26%

31%

43%

42%

People with depression are more likely to get dementia

49%

27% 24%

31%

High blood pressure increases your risk of getting dementia

54%

23% 23%

15%

FALSE

DON'T KNOW

TRUE

Base: All respondents (n=1000) Q19. For each of the following statements please indicate whether you think the statement is true or false * While there is some questionable evidence that some types of dementia may be hereditary, the most common forms of dementia are not and therefore it is more accurate to say there is no evidence 1. British Social Attitudes

ACCESS TO SERVICES

KEY FINDINGS – ACCESS TO SERVICES •

•

• •

•

The vast majority (97%) of New Zealanders would seek help if they thought they had symptoms – with 79% going to their GP. This means GPs need to be fully informed about the symptoms and the dementia pathway. A third of New Zealanders would do their own research. Over 50% think unclear symptoms and lack of knowledge are reason people might not seek a diagnosis. One in ten think a government caregiver would care for them if they had dementia – at the low end of the international benchmark. Around half the population can not name an organisation that supports people with dementia. Positively, nearly 50% say they would like to learn more about making people with dementia and their carers more comfortable.

SEEKING HELP FOR DEMENTIA SYMPTOMS The vast majority (97%) of New Zealanders would seek out further help or assistance if they thought they had dementia. This is in line with international benchmarks. Contacting a medical professional is the most commonly chosen action, with nearly four in five (79%) saying they would visit their GP. A third of New Zealanders say they would do their own research if they had dementia symptoms, suggesting there is an interest in information not provided exclusively through health professionals. INTERNATIONAL COMPARISON (England1)

Visit my GP

79%

Talk to the people closest to me

43%

Do my own research

33%

Seek the advice of a health professional (other than a GP) Ignore it and hope it goes away Do nothing because there is no cure

30% 2%

3% Would not seek out further information or assistance

Doctor or nurse: 76% Partner or family: 72% Friend: 40% The internet: 29% Charity or support group:18% Helpline: 12% Social worker: 4%

None of these: 2%

SUBGROUP DIFFERENCES Those 60-69 years are more likely to visit their GP (90% cf. 79%) and less likely to seek the advice of a non-GP health professional (23% cf. 30%). Maori are significantly less likely to visit their GP (64% cf. 79%) and more likely to ignore it and hope it goes away (6% cf. 2%) Females are more likely to say they would talk to the people closest to them (47% cf. 43%). Base: All respondents (n=1000) Q11. If I thought I had dementia I would.. 1. British Social Attitudes

REASONS FOR NOT SEEKING A DIAGNOSIS INTERNATIONAL COMPARISON (Portugal1)

Seven in ten (70%) New Zealanders think fear is a reason people do not seek a diagnosis for dementia. There is no current comparable international benchmark.

Fear

Unclear symptoms

56%

55%

Lack of knowledge among patients and families

54%

72%

Over half (56%) think unclear symptoms is a barrier to diagnosis. This is in line with international benchmarks. Copyright ÂŠ 2017 2018 The Nielsen Company. Confidential and proprietary.

70%

This suggests there is an opportunity for messaging about symptom identification.

Social rejection Lack of access to health services

Other

Unsure / don't know

Base: all respondents (n=1000) Q20. Why do you think people do not seek a diagnosis for dementia? 1. National Opinion Survey About Dementia: Knowledge, Attitudes And Beliefs

42%

22%

44%

30%

CARING FOR DEMENTIA PATIENTS The majority of New Zealanders think that their spouse or partner would look after them if they got dementia, yet only 50% are willing to look after a relative. Those of Asian ethnicity are significantly more likely to indicate a relative (69% compared to 55% for the total) would look after them, while those of European ethnicity are more likely to pay for an external carer (35% compared to 31% for the total). One in ten think they would have a carer provided by the government. CARER IF RESPONDENT HAD DEMENTIA

Spouse / partner

42%

Care home / rest home

Care giver provided by government

18% 11%

INTERNATIONAL COMPARISON

32% (Germany1) - 45% (USA 1)

Adult child

Another relative

4% (Germany1) - 18% (Portugal)1)

Hired caregiver

6% (Poland1) - 20% (Germany1)

Teenager / young child

- Family/relative

23%

15% 3%

are not willing

11%

10% (Poland1) - 23% (Germany1)

14%

Parent

Unsure

WILLINGNESS TO CARE FOR A RELATIVE WITH DEMENTIA

20% 33%

Unsure

Not at all willing

Not very willing

So so

Willing

Very willing

- External carer Base: All respondents(n=1000) Q14. If a family member of yours had advanced dementia, how willing would you be to be their main carer? Base: all respondents (n=1000) Q13. Who do you think would be your main carer if you had advanced dementia? 1. National Opinion Survey About Dementia: Knowledge, Attitudes And Beliefs

ORGANISATIONS SUPPORTING PEOPLE WITH DEMENTIA

Around 50% of people canâ€™t name a New Zealand organisation that supports people with dementia. This suggests there is an opportunity for public messaging about which organisations support New Zealanders with dementia and the need to raise their public profile.

Base: All respondents (n=1000) Q23. What organisations do you know of in New Zealand to support people with dementia?

GOVERNMENT INTERVENTION A third (33%) of New Zealanders say they ‘don’t know’ if New Zealand has good health and social services to support people with dementia. In addition, the majority agree government intervention needs to improve. Around two-thirds agree the government needs to recognise dementia as a major health priority (63%), the government needs to develop a national approach to supporting dementia (65%), and the government needs to do more to support community organisations working with people with dementia (67%). Strongly agree/ agree

There are good health and social services to support people who have dementia

2% 10%

33%

25%

31%

The government needs to recognise dementia as a major health priority for New Zealand

8%1% 3% 25%

40%

23%

The government needs to develop a national approach for supporting dementia

8% 2% 3% 22%

42%

23%

65%

24%

67%

The government needs to do more to support community organisations working with people with dementia Don't know/ Can't say

Strongly disagree

Base: All respondents (n=1000) Q24. How much do you agree or disagree with the following:

9% 2% 1% 21%

Disagree

Somewhat agree

43%

Agree

63%

Strongly agree 35

LEARNING ABOUT DEMENTIA Positively, nearly half (48%) of New Zealanders say they would like to learn about making people with dementia and their carers more comfortable.

I WOULD LIKE TO LEARN ABOUT MAKING PEOPLE WITH DEMENTIA AND THEIR CARERS MORE COMFORTABLE

48%

11%

2% 5%

Don't know/ Can't say

34%

Strongly disagree

34%

Disagree

Somewhat agree

15%

Agree

Strongly agree

Base: All respondents (n=1000) Q25. How much do you agree or disagree with the following statement: I would like to learn about the things I can do with someone with dementia, to make them and their carers more comfortable?

APPENDIX: SAMPLE PROFILE

SAMPLE PROFILE

GENDER

Male

Female

Unweighted count No.

Weighted

547

48%

453

52%

AGE

Unweighted count No.

Weighted

18-24 yrs

133

13%

25-29 yrs

30-39 yrs

162

16%

40-49 yrs

190

19%

50-59 yrs

174

18%

60-69 yrs

149

15%

70 years +

115

12%